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The Challenges That Come With Independence

12 Oct

So, its been a while since I blogged, all reasons beyond my control.
Well, Little man is officially a teenager now. On the 1st October he turned 13.
As a result his special school felt that he was ready to make a huge step forward into the world of independence.
Instead of of being collected by the school bus every morning he would walk to the train station through the park, take the 20 minute train ride followed by short 5 minute walk to school. Was I hesitant? Of course I was, what mother wouldn’t be? You see, little man had an intense ‘Special’ interest in trains that lasted many years. He was therefore very excited about this big new step he would be taking! Me I was worried sick that firstly we may find him over obsessing about transport once more. It may seem harmless to most but when a child with Aspergers is obsessive nothing else in the world matters.

This however was not my only concern! Little man is a child that struggles to sleep of a night time and if he had experienced one of he’s ‘All Nighters’ then how could I possibly let him ride the train to school? He could fall asleep and spend hours going back and forth to Hayes and Central London… What if he woke up in central london? At least if he was getting collected our morning battle would come to an end once I’d physically removed him from his bed and got him on the transport. But he hated everything about the new transport system, the one he had been placed on this September with little warning of any changes! Little man was used to taking a taxi with two other children and an escort which is provided for by the councils SEN team. This September no more than one day before the return to school he discovers that his escort has gone and will be replaced by another. He also discovers that there is no longer a taxi but a mini bus with a new driver and a heap more kids too. The battles to get him onto the bus were anything but easy! The last week before his independence training started someone from the SEN travel coordination team called me to say that little man was on his last warning! Apparently the new escort couldn’t handle the children, especially little man. I hear a fight broke out between my son and another boy. As a result the escort was pushed (not by little man but another child who as a result had been taken of the bus for good).

So, with this and little man’s pleas I decided that the transport plan drawn up by the school would probably be best at this current time.

To cut a long story short, since little mans been taking the train his had more days off than I care to remember! The first few days were fine. He loved the feeling of independence traveling to school gave him (he still does) however, his sleep pattern has once more gone up the wall and getting him out the door has been a fight that I’m losing. Even when he has left for school his been leaving late. With this and the constant warnings, Little man is on his very last chance and this time its with me!

I’ve made the decision to reintroduce the melatonin despite how its effects make him more drowsy during the school day. What else can I do? It gets to 4 am and I’m seriously at my wits end! Just the other night (well, I say ‘night’ but really mean early morning) I found myself screaming at him… “Why can’t you just go to sleep?” Only for him to look and me and reply “I want to but I can’t… I just cant.” its frustrating… Its frustrating for him, for me… And for the school, especially when they can see his a bright young boy with heaps of potential.

I find myself becoming so angry at life, for we go through these battles, get over them only for them to resurface months later. Its one hell of a rollercoaster, one I have no choice in riding.

Little man doesn’t tend to talk about thinks that may have upset or confused him during the school day, which sadly can lead to all sorts of difficulties, leaving me playing the private eye game. Switching of isn’t easy for most, especially when we have worries and troubles laying heavily on our minds. This for little man, a boy who has difficulties expressing them worries, a boy who already lacks precious sleeping hours, is a struggle on a level most would fail to reach. Its stuff as such as this that makes those morning and night battles that little more difficult than it currently is.

I do sometimes wonder how many other parents there are out there… Going through the same nightly and morning battles that we do. I know there are plenty but at times its a real lonely place.

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Sleep is the enemy

14 Nov

Just when you think you have got it right… Found the perfect solution, the answer to your long awaited prayers.

I don’t know! Maybe if I was given the opportunity to go to bed at 10pm and actually sleep a whole night, I’d fail at the task miserably. You see, once your used to that routine, the one involving very little sleep, you get used to it and get on with it.

We did think things were improving, well, they were! Little man was still sleeping late, but he was sleeping and that alone was fantastic. We changed from the bog standard melatonin for the slow releasing type and boy did we see improvements.

Not only was he going to sleep… Late but not as late as he can do. He was actually remaining that way… A sleep that is! Because this was a slow releasing melatonin it meant no sudden wake ups for the toilet followed by the hours of pretending to be Drew McIntire his favourite wrestler, who keep his mind racing till the small hours.

Like all melatonin, little man became used to it and therefore developed a certain amount of resistance to it. This just meant taking breaks in between. I would just not give him it on the weekends or holidays. Despite this messing up bedtime routines for a day or two, the benefits gained when reintroducing the med was more than beneficial.

But then I started to note side effects, ones that started to, and are continuing to impact on Little man’s ability to receive an education.

The slow releasing melatonin made it extremely hard to get little man out of bed in the mornings. It was as if it was still taking effect. I started to feel like I couldn’t win. Either I struggled to get him up through lack of sleep or now because his meds were to effective. How ironic!

This has resulted in little man missing some school these past few weeks. Its been like trying to wake the dead some mornings… Simply impossible.

When he has been at school, they has been a number of noted concerns from all teachers. It seems that his just not able to concentrate. His either hyperactive (which is normally when he has had no melatonin and overtired) or his almost falling asleep in class and is far from himself. School reported that the Melatonin seems to be continuing to do the good work it does during the night, throughout the day.

With this I lowered the dose following talks with the GP. However, it still seemed to be over effective during the cause of the school day.

I’ve now made the decision to stop it all together. This was the beginning of last week and as a result his just had so little sleep which means so have I! Daddy took the toddler out yesterday as apparently I myself was unresponsive and was therefore left to sleep an entire day. All I remember is waving the children off as they finally went to school… Little man who had only a few hours sleep included. Next thing I was waking up to them returning home at the end of the day. I quite literally sat up from the chair in a confused and somewhat panicky state. Well, it did take me a few moments to remember the toddler was with his father and not off fending for himself.

During my daytime kipping, I had missed a couple of calls from little mans school who wanted to chat about this very issue I’m writing about now. I’m hoping to get back to them today… Or tomorrow If I’m able to remain awake.

Little man had a slightly better night last night. He feel asleep at around 2.30 am, which is actually a ground breaking improvement given his melatonin free. Myself however, no such luck. I laid in bed, eyes open most, if not all of the night. By the time it gets to 2.30am I’m either overtired or just to scared to sleep with the fear I will not wake up.

For now we are weighing up our opinions and will visit the GP again next week. I really don’t want to use any other strong form of medication and am considering requesting to our an appointment at the sleep clinic.

In the meantime, I will also be doing all I can to try and get the little man to burn of excessive energy when he returns from school… Maybe a walk around the woods with my mum and her dog may do the trick. This is something he really used to enjoy but sadly does little off lately.

Well, that’s all… I’m actually nodding off now so better go splash my face with ice cold water ready for the children’s return.

Dream location – The Land of Nod

21 Mar

Drip-drip-drip…. The dripping tap that echo’s throughout the otherwise deadly silent house!

 Tick-tock-tick-tock…. The noisy seconds hand on the grandfather clock that drives you completely insane, so much so you jump from your bed removing its batteries!

 Buzzzzzzzzzz….. The dull jarring buzzing you hear coming from the fridge freezer, just as you’ve almost arrived in the land of nod.

 Have any of the above driven you to hold a pillow over your head in the hope of drowning out the annoyance of white noise or maybe even snoring? If you happen to answer “YES” then I envy you, I really do!

 No, the above is not a typo, its true, yes, all of the above are annoying, that I do not deny, but all three of these scenario’s can be easily fixed (even the added addition of somebody’s terrible snoring)! OK, you may lose a weeks food shop by switching off the freezer, but you can do it all the same!

 I however, cannot switch of my children, although I have sometimes wondered why on earth god didn’t make them with batteries? Some nights are better than others, it’s the others that are currently driving me to write this post which I’m guessing consists of nothing more than rambling, the kind that likely makes no sense! Please bear with me, last night was actually one of those nights!

 Anyone would think I was used to it by now, after all Little Man is 11 already and hasn’t ever really slept an entire night, well not properly anyway. Since his been on the slow release Melatonin, his engaged in a lot of sleep walking and talking so his often up and about even when he is a sleep, which is often not in till some point during the early hours anyway.

 Although I try to embrace Little Mans Asperger’s Syndrome, seeing it more as a gift rather than something disabling. Sleep (or lack of it) is most defiantly one of the hardest issues we have had to deal with for as long as I care to remember.

 Generally I deal with the lack of sleep reasonable well, discounting the time I fell asleep queuing in the supermarket (and yes I was standing)! My head, well that’s somewhere else altogether, seriously, I can’t survive forever with my brain functioning as if it belonged to a chimp ! My point is, I guess I’m used to it and although I don’t get the average amount of sleep many manage, I get by with  grabbing hours here and their, well this used to be the case at least!

 Harley is my youngest son, he was 2 in December. I was blessed with a child who slept throughout the night pretty early on. Day time napping was now however out the question, unless their father was around and when he wasn’t I was basically #•@#@• Then something much worse started to happen, Harley started sleeping less, a lot less! This finally came to a head last week when he demonstrated his stamina in withstanding an alnighter… yes, he stayed awake the entire night falling to sleep at an unforgivable 6am, I was broken, no not physically (that comes in later) but emotionally… was it not enough to have the one child sleep in such a crazy manner… but two… come on give us a break! Of course I explained it away to myself as “His coming down with something” but he hasn’t and its been 5 whole long sodding days and nights. Actually as I type this my eyes are partially closed…. God help me if my Mac ends up on the floor.

 I don’t know why the toddler is suddenly like a child on red bull, but me, I don’t like it one little bit! Of course his then hard to wake and this is when tantrums come into play as his over tired and I get tempted to let him just sleep! It’s an extraordinarily difficult situation to be in when your tired and feeling like you’ve been smashed in the face by a double-decker bus! However, I will try my best as I fear it may lead to more nights like that of the night before. To make matters worse regardless of  him becoming extremely tired, often resulting in him falling into an uncontrolled heap between 8-9 pm (which I note is still reasonably late for him) he still somehow manages to wake up before the clock strikes midnight! Oh… and guess what? He only goes and becomes the life and soul of the party. I’m in trouble if Little man than decides to come out his room engaging in some weird activity as for some reason he’ll suddenly acquire a very sudden interest in his brother, the same brother he screams at to get out his room everyday!

 This was what happen Monday Night Tuesday early hours… I wanted to scream, correction… I did scream… Loudly! Closing the bedroom door, I laid Harley done beside me, however sleep wasn’t on his crazy toddler agenda, he had more exciting things planned, like demonstrating how well he can jump on mummy’s bed and the lovely art of body slamming, with myself being his chosen victim (you know, like those over grown and over weight men who pretend to throw each other around a ring).. Worse when your eyes are closed and it completely takes you by surprise… Ouch…

 I pray to the lord that this is some kind of toddler rebelliousness, one that Little man nor their sister luckily never experienced (through little man more than made up for his lack of tantrums by age 7 and continues to today)!

 Now feeling like a sack of crap, I have important business to attend to! Oh, how I wish that business was in the role of a mid mornings nap…. Sadly it’s tending to the cat litter tray, a sink full of dirty cups and with a bit of luck a ten minute soak in the bath (I hope)!

 Quick Note: If anyone has any tips on helping both an 11-year-old boy diagnosed with Aspergers syndrome and that of a toddler of 2, learn the unwritten rules of sleeping and remaining that way, please do comment! Plus I would love to hear from anybody who has a child on the autism spectrum who happens to sleep walk, sleep talk or both (this is as though  they are literally always on the go)! Even more so if such behaviour is happening while taking a slow releasing Melatonin (only this is when the sleep walking and talking increased for Little Man)?

 Thanks for reading my ramblings and I bid you all goodnight… Oops I mean good-bye!

Melatonin for the child with autism

8 Nov
A bottle of melatonin tablets

Image via Wikipedia

 I may have recently mentioned that Little man has had a change of medication. He is still taking Melatonin, however now his on a different brand, ‘Circadin’ which is a prolonged- release tablet.

  Melatonin isn’t a medication given to Little man as a way to control his Aspergers syndrome, it’s actually given to help him to sleep at night and remain that way in-till a suitable hour. Many children on the autism spectrum have difficulties with settling to sleep and little man is definitely one-off them. 

 Melatonin, actually belongs to a natural group of hormones and it’s something everyone’s body naturally produces. It’s the Melatonin we produce that helps us to become tired and relaxes our mind enough for us to sleep. Its thought that those on the autism spectrum do not produce enough of this hormone hence the reason why so many are unable to sleep or sleep for long periods of time. 

 Little man has had this problem since he was baby and in all honesty it’s grown much worse with age. I wrote an article for SEN magazine back in August which describes the time I woke in the night to find my 4-year-old son frying a bit of bacon in the kitchen, a child who couldn’t understand why I would be angry about this. The most worrying time for me was when he turned all the hobs (gas rings) on and almost gassed us (We now have a safety switch located on the wall.) However Little man is now 11 years old and I feel he is that bit more responsible about stuff like this and doesn’t tend to act in these dangerous ways quite as much. Don’t get me wrong he is still so much more impulsive than most children, I’ve just banged on about the midnight cooking so much, I think his got the message!

 As he grew that bit older, I noticed it wasn’t so much him waking in the small hours that was the problem, more the fact he wasn’t settling to sleep at all. I got sick of hearing people’s advice when stating, “Take his computer away, remove the television from his room etc….” What people couldn’t grasp was the fact that these items had sod all to do with it! It was his mind he couldn’t switch off, not the television!

 Little man started taking Melatonin when he was 8 years old around 8 months before formal diagnosis which he obtained from CAMHS following numerous assessments (another post altogether). At first it worked a treat, I suddenly discovered that I’d spent the last few years a ‘Night Owl’ and now couldn’t adjust my own sleep pattern, just as I began making progress, Bang… the Melatonin would stop working it’s magic and we were back to square one! I really didn’t want my child receiving stronger medication, though I’m non judgemental to those that do take this route, I just felt it wasn’t for us. 

 I learnt that by stopping and restarting the medication it worked better, nonetheless this was only for at a few weeks at a time, meaning I walked around with permanent shopping bags hanging from under my eyes. Little man spent a lot of the earlier days out of school and at home sleeping! I knew that the best way to deal with this was to get tough and keep him awake tough-out the day in-order to sleep at night, but trust me, it wasn’t easy! Have you tried to wake a child who can become very aggressive at 7.30-am given he only went of to sleep at the ghastly hour of 5-am? As mentioned Little man didn’t begin on any type of medication till he was 8 years old, yet we had been faced with the reality of sleepless nights from day Dot. 

 When Little man started reception at age 5 years, sleeping was already a big an issue as ever and by the age of 7 years the school already had the education welfare officer on my back. I can honestly say that it was at this very period of my life that I was the lowest I have ever been to date. I was taken to court and fined like some careless mother who couldn’t give a rats arse about her child. Yet here I was screaming at the top of my lungs, “I need some help here” yet it felt like no one could hear me (the cold hard reality was no one wanted to hear me). I was just 24 years old then, seen as a young mum without a clue! The court went as far as to send me to parenting classes and stick me on a parenting order. 

 It was back then I lived my life on red bull and expressos, weighed a little over 7 stone and booked myself into a counselling . Little man’s Asperger’s syndrome was now at its height of making itself known. My own child would hit, punch, kick and bite me. I remember one day falling to the ground sobbing, I looked up to see him stood before me laughing. His grandmother later asked him why he thought it was funny? His answer, “Mummy had a red face” 

 It was such a long deliberating fight to get him on the CAMHS waiting list and I released that It was only me that could get him there. My therapist, who was a god sent, said to me during one session, “You’re not a bad mother, go with your instincts” that was the best advice anybody could give me back then! I refused to listen when teachers told me rubbish, implying it was his home life that was the issue, always telling me they saw no issues at school (note they forgot to mention to myself or CAMHS that he had been placed on the sen register, and was bullied for mimicking the opening and closing of a train door) these were things I didn’t discover till I wised up and requested his entire educational record under the freedom of information and Data protection acts when gearing up for a discrimination case. 

 I think that the school expected miracles once little man started on the Melatonin. He would constantly be brought in late, given I had spent the last three hours trying to get him up dressed and out the door! I always got dealt the same insulting comment, “What did you forget to give him his sleeping meds last night” Yer…. right, of course I bloody did. It always rattled me a little more given the fact I’d not slept a wink and spent the morning trying to persuade him to remain in his clothes instead of stripping and running away. It still makes my blood run cold, how quick someone who is meant to be a professional is so quick to judge. 

 Of course I ended up back in court, thankfully the parenting order was scrapped, nonetheless I was still fined for the hard fact that yes I was his mother and regardless of any medical reasons and so forth he hadn’t been in school on so and so day so I was therefore guilty. Can you believe that the head-teacher wasn’t able to come due to school commitments and as my sentence was said out that same head master was busy leaving me a voicemail, informing me my child was excluded for 4 days (the 3rd exclusion in around a month)! No, they were no longer stating he was the angel at school like they once did!

 It’s fair to say that his sleeping issues that are a result of his Aspergers syndrome, have had a huge effect on our lives and my (looks, ha-ha seriously bags and wrinkles are not a hot mamma look)!  My point is, lack of sleep has a huge impact on everyone’s ability to function in everyday life, combined with the effects of poor social interaction, the ability to see an-others way of thinking, anxiety and the day-to-day pressures of life itself makes life a lot more pressing for a child on the autism spectrum and therefore the family too. 

 The new medication is taken in tablet form which has been a bit challenging as his so used to the capsules. I’ve noticed that once taken his much calmer within the hour. He sleeps well though there are still nights that it starts lacking in its benefits so again we need to break for one or two days, I try to do this during weekends but sometimes it’s the case by mid-week. Despite this the medication is actually much better then the last one which was actually having no benefit at all. 

 The first week of the new meds there were a few side-effects such as a hangover effect on wakening and he become much more emotional, crying on return from school for no particular reason. He also felt really tired and would fall asleep as soon as he walked through the door, which isn’t something we are not used to, and not really ideal when he has to sleep through the night. I must note, however off-putting these side-effects may sound, they lasted a little over a week, then began to disappear so to push on is the key. 

 If you’re a parent and your child suffers from difficulty in sleeping it can have a massive impact on your life. Little man is under the sleep clinic and although things are not always great, there is the odd few nights we get a great kip which compared to what its been like previously, its good progress. 

 I would advise any parent, whether their child has a diagnosis of autism or not, to go with their gut. Don’t suffer in silence, a GP can make the appropriate referrals and is able to prescribe a medication such as Melatonin (those in the states can obtain this over the counter and looks something like the image above). You as the parent need sleep in order to do the best job possible in raising your child, seek advice before it gets any worse (and believe me, it will)!

A somewhat weird Halloween

2 Nov

Yesterday was Halloween, and in all honesty it was a bit of a weird one.

Alice-Sara returned to school following the half-term  Little man didn’t return in till today. Nonetheless, I wasn’t having him remain in bed all day and he did finally get up after much debate & a pretty standard meltdown!

After giving the kids some breakfast, my youngest took a mid-morning nap which surprised me as he hasn’t done this for quite some time, however, with the bubba asleep and little man refusing to budge from in front of the television to let me watch some ‘This Morning’ I decided to sneak upstairs and indulge in a little twitter before catching up on some reviews (though it’s not like there wasn’t more practical things I should have been doing like, de-cluttering my wardrobe). Oh yes, the lack of wardrobe space I can no longer ignore, as much as I hate getting rid of any of my clothing some of it has to go (with the exception of footwear) that’s a big NO, NO.

Later I needed to head of to the doctor’s surgery to pick up the Little man’s prescription for his Melatonin, which has been change to a different brand as a result of the National health cuts. This basically means, he will now take a brand of Melatonin called ‘Circadian’ given in the form of a tablet, instead of the capsules he was on before. I had also raised concerns with the Doctor as the melatonin seemed to be wearing of quite quickly (or not working at all) The new medication is a prolonged release and can you believe it, I woke up this morning only to realise that Little man hasn’t woken all night not once! ‘Please God let this continue!’ This was the first time I have slept all night in… I don’t know how long!

I also had to see the Doctor who was strangely dressed as a vampire in the spirit of the Halloween. “Um… Yes, this was a pretty strange experience given I was there to talk about my need to change contraception”! This wasn’t something I saw myself doing when I woke up that morning, discussing my women’s business with a blood sucking vampire with fake blood running down his chin!

Next stop was the local chemist to exchange my prescription for something that would get the Little man some much-needed kip. This was just as weird given I was served by a teenager in a cat suit who wore the most freakish set of contact lenses I’ve ever come across (completely white with a little black pin dot in place of a pupil)!

The next stop would be my mothers to collect the children, as I walked the short distance I was passed by cute little one’s dressed in adorable costumes, trick or treating with their parents. I also passed the local yobs egging the bus then running away from the neighbour hood patrollers, “It’s all found and games where I live”!

Just when I thought things couldn’t get any wackier, as I approached my mothers turning, I noticed some random middle-aged guy rolled in a ball laying on the pavement This man was either trying to save a parking space for the wife, or maybe even dead, I wasn’t sure! Well, me being the tit that I can be, “Occasionally” decided to be a  good citizen by asking him, “Excuse me, are you dead” “Come on… if he was, I wasn’t going to get an answer was I !” Sometimes I ask the most stupid questions, but I blame it on having kids 🙂 Well, the good news is, he wasn’t dead, just as pissed as a fart, I did try to warn him it would be an idea if he moved on, (not that he was bothering me, I could just see him getting egged by the rotten lot at the bottom of the hill). He mumbled and then went back to sleep. I tried, but had kids to collect, so went on my way.

Once at my mothers I told my little sister what I had witnessed, it was only then I discovered he had been there some 3 hours before, as my sister  had seen him when collecting my daughter from school! She informed me that some local people who live in the houses near where he was laying, had tried getting him up but he wasn’t having any off it! With that I called the guys in blue, and expressed my concern. No one deserves to be left In that state no matter if it’s self inflicted or otherwise. Well, someone had to move him!

I left my mothers an hour and a half later to see the blue light only just approaching. The poor drunken dude was still laying there on the ground only now he was covered in eggs from his head down to his toes, good job the police were there at last, otherwise I fear he may have been eaten by a hungry fox or two.

It had been an eventful evening, the trip to the surgery had saved me from an evening of “Trick or treat” my sister took them instead, though I felt no guilt when tucking into their sweets when they were sleeping,! They had so many I was sure they would never notice, of course Little man proved me wrong with the screaming and shouting this morning! I’m sure the neighbours came to the conclusion that I had done a lot more than pinched a few celebrations and a packet of mix-up when he branded me a big fat thief, “Nice, I know!”

So… That was our Halloween, a tad strange and one I wont forget in a hurry. Honestly, I’ll never look at that doctor the same way again!

Well, here’s a belated Happy Halloween from ‘A boy with Aspergers’ we hope you had a spook-taculer time!

All burnt-out!!

12 Jan

So with no school little mans sleep routine has gone bonkers. It’s gotton so bad that were lucky if he sleeps at all during the night… But here’s the problem… His sleeping throughout the day! I’ve tried my damn hardest to keep him awake during the day in-order for him to be tired by the time evening comes back a round. But it’s just not happening! If he is tired and wants to sleep in the day then trying to stop this is a risky operation Abuse and meltdowns are likely as a result. He will often sit swearing while crying (swearing normally directed at me) this means his getting zero work done, as trying to home school a child who’s been up the entire night Is a challenging job for any. But with the baby needing constant attention it’s even harder to conquer.

Well the good news is little man should be working with a tutor hopefully at the local libary ( I can’t see it working out at home, to many distractions) The tuition is for 5 hours a day 5 days a week. So that’s a total of 25 hours which Isn’t a full time education but it’s better then the nothing his receiving at present. I will at least be able to get things done that need doing without the constant worry of having to drag him from his Pitt encourage him to dress in-order to come with me when I need to put some food in the cupboards “Its not great making your ten year old aspie follow you round the supermarket when his howling abuse and throwing himself into the boxes of cocopops because he hasn’t slept the night before and anything and everything is a potential trigger” So for most of this week I’ve just left him to it, if his gonna sleep the day away so be it! He won’t have that choice for much longer! My god his going to be a zombie… I can just see it!

Melatonin is something I’m fast giving up on. It is having little if not any effect on him whatsoever.
Maybe another visit to the doctors is in order! Though I hate the thought of strong meds, I just don’t think we can do this anymore!!

When little man was four years old I once woke to find him cooking some bacon at 4am. “Remember that this is a four year old boy I’m referring to” I swear it was the smell that rose me from my bed. I half sleepingly staggered down the stairs thinking it must be his father who was over for the weekend. I walked into the kicthen… “Bacon Mum?”
The sight that greeted me took me from a half dazed and confused woman to a fully wide awake screaming mother!! He looked at me as to say “what’s the big deal here, it’s just a bit of bacon”

You see I grew up as a child suffering from bad OCD. I concealed it for so long it finally drove me insane and age 12 I ended up in hospital.
I had a loving family and great homelife… But deep in the background, buried in my head was the horrid monster that was OCD. I dealt with it alone for five long years without ever telling a soul and as a child this was a lot to contend with. The OCD first reared it’s ugly head when I was just 7 and it all stemmed from anxiety brought on by the fear I had developed of fire. It was the wake up get a smoke alarm ad on the tellvision that kicked it all off. The advertisment showed a lit cigarette fall from the ashtry onto a brown leather Chesterfield sofa that happen to be the exact model we currently had in our home. I checked my mother’s ashtrays filling them with water to ensure nothing was alight. I counted plug sockets to ensure they were switched off. I couldn’t reason with my own mind… It was ludicrous I know! But your powerless to control the urge. I would end up rechecking 8 times plus a night… So to see my little 4 year old grilling a bit of bacon and the prospect of what could have happened shook me to the core. For a whole year after that episode I found myself counting and checking once more… Like so many times before!

Being a parent naturally means you worry more about the things that could put your children in the danger zone, however I constantly worried to the point I was driving myself la-la!!!

My point is little mans fearlessness became my fear! Inevitable Little mans sleeping problems became my sleeping problems too. He never slept because he didn’t have the natural ability to shut himself off from the world, from his thoughts and interest… I didn’t sleep because I needed to watch my child and ensure his safety along side everyone elses. This had became the norm and continues to be for the forseeable further.

In late 2008 little man started on melatonin, at first it seemed to be working. Ok he still may not sleep till 1-2 am but when your child is able to stay wide eyed for a whole 24 to 48hrs hours at a time you appreciate this huge improvement. I’ve always said 4-5 hours sleep a night is a hell of a lot for my little man. Problem was I had become so used to having to be a night owl that I now had trouble adjusting to this new routine, I would often become overfatigue which isn’t a great place to be! You see once I finally manage to revolve my sleep routine around that off little mans it suddenly changes again and were back to square one.

As a parent of a child with extremely bad sleeping habits there are times I fall to pieces. However I consider myself to be some what a pro by now… Though It’s not easy holding yourself together, trying to stop yourself crying for the most silliest of reasons… There are days I’m a walking emotional wreck and other days a ticking time bomb. I’ve fallen asleep standing up and I swear I once fell asleep walking! I remember when I had my youngest child in December 2009… I would only have to yawn and the stranger next to me would say, “aww is the little darling keeping you up all night” as they glance over into the babys pram. Sometimes I smiled and nodded, other times I’d reply, “No his fine, it’s my 10 year old that keeps me up through out the night!”
The look of pure horror slapped across their faces. Many would preachify & instantly assume it was down to disobedience! I would be offered the ignorant suggestions as if they somehow knew my child,”Take the TV/Games console out off his room” Or even,”Shut his bedroom door and refuse to let him out” Some would refer to him as some kind of rebel out to make his mothers life hell!
If having a child with Aspergers has taught me one thing… It’s not to generalise… As we are all guilty of having done so at some point of our lives!!

My child is a child who walks around beeping and repeating bus destinations… He don’t care if I take his TV away or romove the xbox from his room. I can’t take away his thoughts… I can’t shut those out. If I could remove his thoughts just for the duration of night in order for my little man to catch some zzzz I would! But sadly that isn’t an option.

Some people will never really understand what it’s like to have a child that suffers with insomnia… the way it impacts on the parents and the child… on ones ability to function throughout the day… Those of us that do it everyday learn to adapt and somehow survive and go on having had such little sleep, if anything we get good at it. I’m told some people are designed to need less sleep then others… I suppose that’s the way my little man is designed to be… And though I wasn’t born to be this way, I learnt to be, because I had too!

I’m not under any illusions that there is a magic potion… But I hope that god is on our side and one day this issue will at least ease!

But the one thing I wish for more… is better understanding… When your child is late for school there is no eyebrows raised when You state your child has been awake thoughout the night. That everyone involved in your childs life understands or at least trys to understand the seriousness and significant impact the issue has on the whole family… To speculate and blame is never going to help… No parent needs criticism but understanding

Well… I write this with half open eyes but given it’s not even 9 pm the night is still exceedingly young for me! So for now I wish you all good night and hope that you all get some beautiful shut eye 🙂
Below is an example of my mood as a result of a sleepless night.

You gotta be kidding me!!

13 Jan

As most of you may already know I’m a mother of a 9 year old boy that has been diagnosed with Asperger’s. You may also have read in past post that over the last few years I have had many problems with my sons schooling. Well just when I thought things were finally improving they have become so much worse. I received a letter a few weeks back informing me that I have been summons to court for the time off school little man had last year. Are you kidding me! What a joke.  I was informed that as a parent of a child with a formal diagnosis of Aspergers I myself and my child would receive a great deal more help and more services would be on other to us. This has not been the case and to be honest I’m sick of the way my sons school have treated my son and my family. This stems back for a long time and I’m sure at some point I have mentioned just a few of the many problems I have experienced with little mans school life. Yes his attendance was not the best but this was for reasons beyond my control, reasons I feel could of been avoided if more help and services were on offer. At the beginning and the best part of last year I had problems with little mans sleeping patten. Problem was he didn’t seem to have much of a patten! Most will know that children on the autistic spectrum live their lives dominated mostly by a routine. Without routine things seem to go a little of the rail so to speak. But most will also know that getting a bedtime routine into place for a child with Autism/Asperger’s is also a pretty hard task in itself. Little mans bedtime routine was practically none existent. He had no issue with spending the whole night awake. I don’t mean getting up several times in the night I mean not sleeping till 5-6am in the morning. Yes this is a huge problem when he needs to be in school for 8.55am and so by 7 am it would be a good idea for him to be getting ready. But I could only dream. It would be a long and tiring ordeal to get him ready and into school. There would be screaming and swearing on his part that is and he would nearly always refuse to get up let alone get dressed. Let’s not forget I’m sleep deprived too. What also makes me mad is at least half of these absences are in fact not absences at all! More like lateness. If the children are in school past 9.15 am which is the time they shut the main gate meaning all children must report to the school office, then the child will be marked in as attending just half the day. They will lose their morning mark. But if there is a fire the school are well aware that the child is in fact in and not absent. So all the mornings missed are then added to make full days and then added to their over all attendance. Are you thinking what I’m thinking?? How in gods name can this be the case. This makes the case against me in court look a great deal worse. There was many days in which the children, I say children as I’m including my daughter have got into school way past 9.15 am. When I expressed my concerns to the school about little man’s refusal and reluctance to go to school and this matter making him and indeed my daughter overly late for school I was assured that bringing him rather them not bringing him was most  defiantly the best option. When I did the office staff were nearly always rude and made me feel like a naughty school girl. No matter how hard things become and how much I asked for help I still struggled on alone. I did however get our doctor to prescribe the natural medication Melatonin. This has helped but took time for everything to come together. We still had to get him used to the meds and settled into a routine. It’s only been since around the end of last year that huge improvements have been noted. And since then a large improvement has been made with little mans schooling in terms of lateness and overall attendance. However his behavior at school has taken a turn for the worse with many more letters and phone calls being made to me to report his bad and unmanageable behavior. This has to be due to the fact he is sleeping much better so has a lot more energy to get rid off though out the day. With this turn around I feel as if I have gone from one huge problem to another. At least at long last they see a different side to him. As It was fault that most of his undesirable behavior was happening at home and at school he was a more manageable child. I’m not pleased for his unruly behavior but now you must be able to see my parenting skills are not to blame.

So you may think that the improvements that have occurred towards the end of last year and this year would be enough to stop any future court action from going a head. Well it don’t look that way. I feel that after many meetings that have taken place and just as many promises that have been made I would be receiving some help with little man instead of having to stress about a court date right on top of just having had a baby. Why wont you just help me that way we both get what we want! Better attendance and most of all a better education for little man. Well with this latest kick in the teeth and a string of other problems and broken promises I have taken it upon myself to try my upmost hardest to remove my son from his current school placement and into one witch is better suited to his needs. A school that looks at helping the child achieve their goals and lead a full and happy school life. And this way he would be picked up for school and I can concentrate on getting my daughter to school on time. Yes sounds like a win win situation. You would think so! but firstly I have to get his uncooperative school to statement him. He has Aspergers and this is something that still has not taken place on their part. After a recent phone call with the new deputy head and senco of the school I was told much to my disbelief that she was not aware of him having Aspergers and she had no notes on the matter. She then went on to label him to be a child that suffered merely with behavioral problems and instead of one to one education and extra help he just needed to undergo behavior modification. This is the straw that broke the camels back! How bloody dare she. My son has a recognized fully diagnosed condition in which I am registered as his full time carer and have done everything in my power to work with the school and not against. It was not long ago you proceeded to say the problem behavior I reported was not a problem that you experienced with him in school hours and now he has a behavioral problem!!! Crazy cow.

With this I will deal with the court case and then seek advice on removing him with out delay. I think I have a solid case to do so. How is it that with a diagnosis of Aspergers my son receives no SEN at school he has no statement and worse still you have no record he was ever diagnosed despite the fact we have had meetings on the matter and  I have a letter from the school stating you have received his diagnosis in the post.

If anybody has any advise what so ever it would be greatly appreciated. I live in the UK and my son attend a mainstream primary school.

Melatonin update.

3 Apr

MELATONIN, HOW IT’S WORKING FOR US!

It’s been a good few months now that little man has been taking Melatonin for his sleeping problems. Is it helping? Hell yer! 

I was very against little man taking any medications what so ever. But his sleeping problems were well lets say heading to dangerous levels. After speaking with the doctor that was dealing with little mans case, and hearing the pros’s and con’s of the medication we decided Melation was the best step forward for us. Given the fact Melatonin is a natural product I felt this was a good option to take. 

I remember writing my first blog post a few months back about our first few nights and then weeks with little man on the treatment. After some ups and downs, sleep walking and talking things seemed to be going great. Now a few months on things are getting better and better. The thing is with this medication there is no miracles. Once the tablet is taken the effects will wear off after an hour to an hour and  a half. If your child does not settle by this period there is a pretty great chance they can or will over ride it’s effects. Yes this has happened once, maybe twice with us but on the whole little man gives in to the sleep that he so badly craves. 

I can not Begin to express my feeling’s to the way I felt when G slept his first whole nights sleep in god only knows how long. It wasn’t that I was so happy to not be having a bedtime battle, more so that I was so happy to see my son getting something his body so badly needed SLEEP. I can honestly say I have seen a lot of improvements in little man. LET’S GET ON THING STRAIGHT! MELATONIN IS FOR HIS SLEEPING ISSUES NOT HIS ASPERGER’S, EVEN THOUGH HIS ASPERGERS MAY BE THE CAUSE OF HIS SLEEPING PROBLEMS! What I am saying is yes G still has sensory problems, obsessive interest and so on, but he also has better attention, more energy and is not so snappy. All this is thanks to a good nights sleep. A good nights sleep is something all children and adults need ASD or not. We all would find it extremely difficult to function given nights of little sleep or no sleep what so ever.

So yes Melatonin is working for us. If your are thinking of putting your child on Melatonin then speak to your GP it may be right for little man but everyone is different. If you are saturated in the UK like myself this Medication is only available from your doctor via a prescription.

Gold stars for G

29 Jan

Guess what everybody? Im finally becoming a well focused, high functioning human being. Can I just show my appreciation to the person who created Melatonin. Whoever you are Thank you.
Wow was starting to forget what a nights sleep felt like! No really I was!
Sleep is something me myself or my son are not very used to. His been taking Melatonin for around two weeks now. As you may of worked out yes there has been some improvements taking place:) If you follow the blog you will remember sleep was non-existant. The last time I wrote a post about bedtimes was just a few days after starting Melatonin and things were going ok. Melatonin is no wonder treatment but once it’s effectiveness starts to kick in then oh boy it is extremely welcome.
Knowing my little boy is getting that much needed sleep that his little body so craved makes me want to cry with happiness:) Watching him run around full of life is a exceedingly good felling.
His a little boy My little boy! all little boys need a good nights sleep to be there best tomorrow. I tell him this every single night and I think he has started to listen. Gradually I’m seeing improvements in his behaviour and gradually for this reason his started to see more stars on his chart meaning more rewards for G. His over the moon at this and as you can see so am I:)

Sweet dreams

15 Jan

Night night G. As i leave the room i think to myself please god let this work!

It’s night three of my son taking the supplement Melatonin. The first night well lets just say that it didn’t go to well. After having spent what felt like forever never getting any sleep i suppose i was expecting something amazing to happen. When it didn’t i almost felt like giving up. G took the Melatonin and after being awake a further hour fell asleep only to wake after two short hours spending the rest of the night wide awake. Night two was fabulous! Given the fact G had only slept two hours the night before i still sent him to school in the hope he would slept better that night. Melatonin was given at 7.30pm and amazingly my boy was sleeping by 8pm. Wow i was ecstatic.

Despite G being asleep i found it increasingly hard to sleep given the fact i was not used to such privileges. Tonight was the real test. G has had a full nights sleep and a full day at school and seemed full of energy. This would confirm weather the Melatonin really was making a difference.

Well it’s been a few hours and little man is still dreaming. Something fantastic must be happening because it normally takes half the night to Seattle him. So it looks as if we may be making great improvements in the bedtime area. Apart from his sleep talking the house seems a lot quieter which i must say is rather nice but will take some time to get used to:)

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